Advocacy is a Neuropathy Power Tool

Today's post is short and to the point and comes from (see link below). By means of (amongst others) letter writing, phone calls, individual visits, group visits, testifying at hearings, patient coalitions and the media, it encourages people with neuropathy to become proactive in the fight for recognition of neuropathy as a significant and problematic disease. Not only people with HIV and neuropathy, but diabetics, cancer patients and people who contract it for any of the many other reasons, need to publicise how debilitating the disease can be. It has to stop being an individual, lonely and socially excluding disease (sounds alarmingly familiar for people living with HIV!). Nine out of ten people on the street have never heard of it! That has to change surely!

Advocacy is Empowerment


All too often, we sit around and complain about how the health care system has failed, how research dollars are going into the wrong pockets, or how accessibility is lacking in our community. Becoming a patient advocate means having the courage to take action and do something to help yourself and others suffering with neuropathy. Taking action, whether we do it alone, with others in our community, or with our support group, is empowering. Those of us who have the power to fight must do so for ourselves and for those who are no longer able to fight for themselves.

People living with neuropathy and those who love them have the inherent ability to be passionate and persuasive advocates. This is because their words come from the heart and from firsthand experience. Consequently, they are not easily daunted. In fact, every “no,” every closed door, just adds fuel to the fire. Being “on fire” for a cause is the key to effective advocacy.

Empowering yourself means that you should understand neuropathy and know how to navigate the HC system in your state. Once you are educated you should get involved and participate in the policies that affect your condition by writing letters, making phone calls, sending an email, participating in coalitions, working with the media or even visiting your local elected officials.

Remember, “Advocacy Is Empowerment.”

Blog Archive